A Risky Proposition

Into my news feed this morning came this video, describing the development of a playground in the midst of New York City full of potentially perilous materials such as hammers, nails, saws, and……well….. junk.  To add insult to injury, parents are forbidden to enter. Hard to imagine in this western world of liability, and equally hard in the global South’s world of fiercely protective parents. And yet, research and study tells us there are important and in fact essential benefits to risk that make it worth a closer look.

The article reminded me of a number of things. I live near a mostly Amish community, a faith group that has chosen to reject much of technology as a means to preserve the strength of their community and their religious focus. Although my family is not Amish, we live closely alongside many such families.

Manamish childy if not most Amish families are farmers, and very good farmers at that .It always amazes me to see children as young as 4 years old on the roads, unsupervised, with the reins in their hands as they drive their ‘pony carts’ while cars whiz by at high speeds. One could criticize, or at least wince thinking of the danger, but one cannot deny the competencies that are developed from taking such risks.

For people made vulnerable by the impact of disability, protection and ‘safeguarding against risk’ matter a great deal. In fact, in Social Role Valorization principles, we often  teach about the need to ‘bend over backwards’ to compensate for vulnerability. No wonder, with our study and understanding of the wounds of brutalization and death-making. Today, though, I am reflecting on the benefits of risk-taking, and how reasonable risk helps us all gain so many competencies. I believe the concept of the dignity of risk was first described by  Robert Perske in 1972,

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Robert Perske (1927-2016)

about the same time when Wolfensberger’s conceptualization of ‘Normalization’ was sweeping the western world. It is a peculiar thing that the western institutions, and the ones I see in India as well, are such a mix of perilous and overprotective, at the very same time. Perske reminded us that overprotective can also be perilous, as people are likely to be sheltered from life’s most important lessons, remain dependent (and devalued) and not get the chances for those ‘healthy stretches’ that cause as to grow in leaps and bounds, gain confidence, and help convince others that we can do, can be, and can become. Unfortunately, the dignity of risk also can be used as a weapon, as when people get hurt or harmed and others say, “their choice, their fault”.

I think the balance between over-protection and under-protection sits at a particularly nuanced intersection for each person, and in all different life areas.  Finding that sweet spot is a part of helping a person to grow and develop. Missing it is to miss a prime developmental opportunity. The famous Russian psychologist Lev Vygotsky  first

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Dr. Lev Vigotsky (1896-1934)

described this area with the intimidating phrase, “the zone of proximal development”, but we can understand it as the tension point of PUSH where  just the right amount of risk will allow the person to burst into the next level of learning and growth.

So, there’s a rambling group of morning thoughts about not only the scary side of risking, and the great need for us to know people well enough to help find that sweet spot where failure is not disaster, but where the push point for growth is identified and allowed to be pressed.

References:

Perske, R. (1972). The dignity of risk and the MR. Mental Retardation, 10(1), 24.

Vygotsky, L. (1987). Zone of proximal development. Mind in society: The development of higher psychological processes, 5291, 157.Wolfensberger, W. P., Nirje, B., Olshansky, S.,

Wolfensberger, W. P., Nirje, B., Olshansky, S., Perske, R., & Roos, P. (1972). The principle of normalization in human services.

A Foundation of…. Icebergs?

imagesMetaphors have great power to shape our mindsets, govern our ideas, and make things crystal clear. Today, I was in a forum to discuss the strength of a movement. The metaphor of a “foundation for inclusion of people with disability” was used, and we all immediately identified with it. Every building needs a firm foundation, made of solid concrete, or strong steel sunk deep in the ground. Otherwise, we are a house built on stilts, easily swayed by a change in the weather. Good metaphor, indeed.

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We immediately began to work on what those foundational concrete blocks might be…great policies, strong models, documentation proving best practice, committed staff, standards of inclusive practice (i.e. is 50% inclusive OK, or is it 80%).  Great to get a handle on this, and a seemingly sensible approach.

However, a second metaphor was posed…one that struck me hard. Perhaps the foundation is not made of concrete block. Perhaps the foundation of our house of ‘inclusion’ is made of icebergs. At the tips are the visible icebergcomponents –policies, program models, rules, standard operating procedures, staff commitment, effective procedures…beneath sits an unseen mountain of commitments to people, values, depthful understanding, sense of purpose, history, biases, passion, world views, spiritual and societal beliefs, and desire for change. The tip is easy to formulate – just find the right model, develop the right protocol, replicate a ‘best practice’, determine the proper quality indicators, write the standards for inclusion.

And, yet, the result will, in the end, be driven by that massive, unseen, powerful part of the iceberg. I suppose what is under the tip of the iceberg will remain a mystery, by definition. By its nature, we may never know it all. However, our acknowledgement that it exists, that it is powerful, and that it drives what will in fact bloom from our efforts commands my attention today.

Thanks go to the good people at the Pennsylvania Inclusion Higher Education Consortium along with today’s thought provocateur John O’Brien for this rich discussion and where it may lead.

Reflections on Social Role Valorization

We recently spent some time in Chennai conducting a day-long workshop at BALM, the training institute associated with Banyan, a leader in mental health services in India. This workshop was organized by several people who attended our training in nearby Pondicherry last spring, who felt a determination to bring these ideas to their city. We spent our time together studying Social Role Valorization (SRV) and discussing how devalued people can access the good things in life. Over 40 people attended this workshop, several of whom will be attending the upcoming four-day intensive SRV course in Delhi. We were pleased to reconnect with our colleagues at BALM, and were especially thrilled to learn of this write-up about the workshop, written by BALM students/trainees. We encourage you to read their reflections for some powerful insights.

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Happiness is not all it’s cracked up to be….

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The Jinn, or Genie, and the magic lantern story leads children to think, “if I had three wishes, what would I wish for?” Some logical and clever young minds answer with the definitive statement, “I wish for unlimited wishes”, thus immediately lifting the pressure of coming us with “the answer”. Not as logic-minded as some children, I remember coming to my own imperfect 6 year old version of the answer, “I wish to always be happy”. Seemed to solve the problem for me at the time.

Little did I know what a vexing answer this is was to be to me, even today.  Many people in service to vulnerable people say that the gauge for the success of a particular effort on behalf of their clientele is the happiness of such people. Nowhere is this more evident than in efforts towards the well-being of people with intellectual and developmental disabilities. I have no doubt that this perspective must be closely tied to our stereotypes that “They are always happy” or  “They don’t really experience anything deeper than “happy” and “sad” – and so are shallow and un-nuanced, simple beings”

SRV leader Joe Osburn meticulously described the problem with the happiness issue in his 2009 article, “The happiness issue: a brief elaboration on a common obstacle to Social Role Valorization”, so I direct those interested to that excellent piece of thinking and writing. In the meantime, I am reflecting on happiness in my own life and those I know. Seems to me that happiness is only taken in fully with a certain measure of suffering. Happiness does not reach the depth of ‘full and rich’, those times that define our lives, help us discover our own capacities, and reveal our purpose and best selves.

As some wise person said, happiness could be said to be having a full box of chocolates, and sadness is when that box is empty. In my own experience, some of the most important moments that define my best self and my hoped for self are those that are deeply uncomfortable, or even contain a measure of pain and suffering. The period of my mother’s illness and passing was, for me, a period of richness and great sadness, and was undeniably transformative. Happy, no, but I would not have missed it for the world. Watching my children ‘become’ has been a source of abiding joy, intense stress, and great fear, alternately and at the same time. Traveling alone for long periods of time is terribly lonely, and also greatly fulfilling. Happiness and sadness come and go in all those life experiences, and in the grand scheme of things seem unimportant and transient.

So, when we talk about how ‘happy’ people are with the services they receive, or how ‘happy’ they appear to be while in our services and program, I try to keep this in perspective.  Happiness in others makes us feel good, particularly when we feel we are responsible for their happiness. This should give us all pause. Rich, full life, made up of freely given relationships, a sense of belonging, a good reputation, growth and learning, and opportunities – now these things count in full measure towards what I want in my own life. I’d like to think they matter more than happiness.

People with disability are fully people, with the complexities, nuances, full range of emotions, drives, and contradictions that reside within all humans. Happiness seems to me to be a transient state and not always worth wishing for, in our own lives, the lives of those we love, and the lives of those we want to stand by, with and for.

 

 

Reference:

Osburn, J. (2009). The ‘happiness issue: A brief elaboration on a common obstacle to Social Role Valorization. The SRV Journal, 4(2), 33-41.

Feeding the Vision in West Bengal

What an amazing time to have a small role in the shaping of a social change that will be written and spoken of for decades to come. A vision of an Indian society in which people with disability have a valued place at the table is emerging, and with that, the consensus that this is a movement which is not only good for people with disabilities, but a part of what must happen for the benefit of everyone.

Although practice lies far behind policy, law and rhetoric, the will is strong and the people are beginning to establish a vision of where they are headed and also why it matters.  A local representation of this unfolded in West Bengal this past weekend, as over 100 change makers gathered at the Kolkata Lions Club to add momentum to this work of building an inclusive India.

Respected, tireless leaders of the movement who have been fighting for decades for a fair shake for people with disabilities shared their lessons from the early days, when people with disabilities were forgotten, ignored, hidden, and left behind joined us for the day.  Dr. Rekha Ramachandran, founder of the Down Syndrome Federation of India, and change warrior in India, spoke truth about the realities of past and present, recounting essential truths to a rapt audience.

New leaders spoke with passion about the progress that is being made, and began to describe the future as we see it. People with lived experience of disability took to the stage to tell of their work in starting entrepreneurial businesses. Families of people with disability, spoke with hope, still mixed with trepidation and worry, of the futures of their sons and daughters.

As I looked over the audience, I saw evidence of our progress by the number of strong leaders who make up the disability movement in Kolkata – those we have met in workshops, planning sessions, and dialogues here in West Bengal and in other places as well. I see the growing confidence of a movement which is finding itself, discovering its own power, and beginning to see the possibilities of an Indian society where everyone has a place and that place is honored.

For me, this day spent with like hearts and minds was rejuvenating and life-giving.  Of particular power for me was seeing that the event was conceptualized by new leaders, such as Amrita Roy Chowdhury, founder of Transcendent Knowledge Society and a woman with a growing vision of what it means to stand by, with and for people with disability. Standing beside those of us who have been in this work for decades, adding their own important perspectives to the common wealth of knowledge, and adding optimism, a sense of surety, and their own images of a future that works for everyone makes for a potent recipe for change. Congratulations to the organizers of this event, Dr. Monidipa Bannerjee, Dr. Rekha Ramachandran, and the indomitable Amrita Roy Chowdhury, and all others who made this important day happen.

Invitation

I astonish peopleYesterday, I asked a question to a group of about 40 people from all walks of life, gathered under a hand-constructed hut providing afternoon respite from the hot Tamil Nadu sun. Sitting, standing, listening intently, are men, women and children, mostly south Indian, from this rural part of Tamil Nadu.  People from the surrounding villages, people connected in some manner to this fledgling but beautiful effort in the district of Villipuram to bring together people with and without disability in communion, community and relationship.  All of these people care about restoring the plot of land they have to fruitfulness, and restoring themselves and others to the notion of community that, for many of them, has rejected them so profoundly. Some young people in the group are volunteers from Spain, France, the Netherlands, and Germany, here for a few months or weeks to try to move the world forward a bit. Most, though, are from right here in Tamil Nadu, and have stories of brutality and rejection to tell that would make your hair stand on end. They are people who grew up in orphanages, or were abandoned in hospitals, or had stones thrown at them, or were told, quite literally, that there is no place for them in the world. There are also families and those who have been caught up in the vision that this little place holds for us to learn how to be together.

It’s a question which seems unaskable, when standing in front such a group.  It’s rude. It seems an affront, an impossibly personal question when one considers the truth about what we as humans have perpetrated on such people and their families. I steeled myself, and asked what their vision was for their lives and for the future. Seems a hard thing to ask someone who is in a small lake of calm after a sea of trouble. It’s a lot to ask. And the answers came flowing.  Many people even stood up, came to the front of the room to be heard by all of us. Such dreams we humans have. Such robustness. And here is one of the statements that caused a small shift inside me.  One that I believe made an impact on each of us in that gathering in shelter from the harsh Tamil sun.

“I want to be invited to come back”

What a bold and powerful assertion for this South Indian man to make.  He has been so profoundly rejected, this man.  And yet resolute that it is not enough for us, in these enlighted days, to allow him a seat at the community table.  To afford him some sort of job. To allow him the right to marry. To make sure his children and all others are allowed into what he calls ‘normal schools’, to not ask for his father’s name but to call him by his very own name.

Does he recognize what he is really asking?  Much more than simply a pathway back to typical Indian life, or permission to enter.  That is not enough, not by a long shot. He understands that after such rejection and brutality, he wants to be issued an invitation.  A request.  One that allows him to decide whether such a community should be graced with his investment, his presence, his gift. It seems to me only fair.

His final vision is that he will “astonish people”. That his children and grandchildren will sit all around him in respect, and look to him for wisdom.  Again, it is only fair.

Quieting that small voice….

Regardless of what is happening specifically in one place or another across the world, we cannot help but see ‘signs of the times’ that Dr. Wolfensberger helped us become keen to. Devaluation is universal, and each of us holds devaluing thoughts and ideas about groups of people. We may wish we didn’t, but we do. Sometimes such negative and harmful thoughts rise up unbidden in our minds. However, we hope that we catch ourselves, that we recognize it, and that we quiet that voice, recognizing that we can be our better selves when we set our minds to it. When the tenor of the statements made by some of the most highly influential people on the planet reinforce those negative stereotypes, they likely give us permission to be less than our best selves, or maybe even our worst. They can spur us quickly from thinking bad thoughts to doing bad things to people.The impact of that across our global society, where an idea or a statement can cross the globe in seconds, and encourage our “collective bad selves” is a terrifying prospect to me. We need to help each other quiet our worst selves.

One of my meditations in times of trouble for people I am trying to stand by, with, and for is to ask myself, “What would it take for me to do really bad things to others, for me to violate the principles I try to live by? To translate bad thoughts into bad actions against other groups of people?” This is a hard set of questions to ask, and harder yet to answer.

 

 

On the ‘eve of a listening session

Tomorrow, I have the responsibility to listen, learn, and react to the voices of nearly 200 people with intellectual disabilities and their allies and mentors. I will ask them to share their perspectives, their histories, their vision, and their opinions.That is a lot to ask of people, and tonight, I work to prepare myself for this. I will try to be a good servant to their voices and their experiences.  I will faithfully record their voices, words, and intent as best I can.  I will share those voices to those with power to make change and move towards the imagined future they will speak of.

The challenges are significant as a person with automatic status amongst many Indian people by default of the geography I happened to be born into. This is the kicker for me – most anything I saw or do seems to commands respect and attention.  My ethnicity as American of European descent brings automatic legitimacy, or at least interest, to whatever my message is, and that may not be fair or helpful much of the time, but it is the reality. It is also a reminder about the realities of having a disability in India, or just about anywhere in the world. It’s not fair that people think they know everything about you just because they think they know one or two facts about your birth, or your condition. But it also just is. The fact of having a disability – particularly an intellectual or developmental disability, makes people think they know everything about you.  Not right, not fair, just is.

Our work to change the future depends on us recognizing the injustice, not of disability itself, but of the judgement and stereotype that is so entrenched amongst most people. Tomorrow, it is my commitment to keep myself as small as possible, so the people I am listening to get to be big. That is only fair and only right.

 

 

 

 

Making It Real

The 24th National Parents Meet in Jalandhar, Punjab was a potent mix of passion, gritty determination, and celebration. From across India, several hundred family members of people with developmental disabilities came together, along with their sons and daughters, to meet, plan, share, learn, and celebrate the hard-won gains they have made. As had been the case in most places, it is the coming together of the parent groups in a common voice  which has formed the backbone of the advocacy movement for people with intellectual disabilities.

The disability movement is India is a smaller community than you might think, so it was no surprise for me to reconnect with people I had met at other events all across India.  In this way, I had a small taste of the kinds of strong connection that these families have for each other through their long and faithful work towards creating a world where their children have access to the good things of Indian life. Governmental leaders and professionals came to speak and listen, and were respectful to parent leaders, recognizing their natural authority and their experience.  Generational leadership changes within the parents association, the self-advocacy movement, and the field itself speak to the change that is in the air for India, for the many people with disability present at the gathering, and for families.

As an auspicious sign of “making it real”, which was the conference theme, a young man with disability who was present for the conference was introduced to the Pro-Chancellor of the University where the event was taking place. In the course of that very day, he was interviewed, offered, and accepted a position at the University which includes housing and full benefits.  Now that speaks to the power of community networks, the importance of people with disability to be in regular life, and the potential that typical people can and will open doors to welcome people with disability when given the opportunity.

 

 

Make a little room

 

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It is tempting to think of big sweeping changes as we consider our work of helping a society learn to make space for everyone.  Big plans for our initiative were explored and crafted out of our hearts and minds 9 months ago in New Delhi as we imagined ideas towards inclusiveness would spread across India, policy would shape itself around such ideas, and we would be a part of the change movement that is a part of India in so many diverse areas. Indeed, it is an exciting time to be doing this work, in this place and at this time. As we re-gather with our planning group nearly a year later, I am reflecting on all of the work that has been done, and discerning which is of biggest import.

We know that for ideas to take root and change to happen, work must be done on all 4 levels – societal, community, family, and individual. It is a bit of a  rush to think about the impact one’s work may have on the very fabric of society, and indeed, the change agentry work being done  alongside The Hans Foundation may have just such an impact. However, the impact of a good idea that has the capacity to change the lives of an entire group of people must resonate in the lives of individual people and their families for us to grasp the tender core at the heart of the matter. For, in the long run, and also in the short run, the experience and impacts of having a disability in Indian society is experienced by individual people.

A few months ago,  a young man of 21 years of age gathered with a small group of people who care deeply for him to think about his future.  He is a man who speaks little, and many would say he is impacted by autism in significant ways.  He was accompanied by his parents, his teachers, and a number of others interested in beginning to explore and create a positive and possible future alongside him.  A number of commitments were made, as we imagined this young man developing a network of friendships which will expand his resources, and help him transition into the role of an adult son, with his own relationships. A vision of a young man who is has a bit of an adventurous spirit – who we can see as a hiker, a trekker, a music lover with an awesome set of headphones and an eclectic playlist.  A man who has friends and relationships with people outside of his family, and has a bit of a life outside their warm and strong family foundation.

At the conclusion of our work together, his mother spoke movingly of how it was a risk  thinking about her son having a real future, and how hope had stirred again inside her.    A month or so ago,  she sent me a quick email because she could not wait to share the news until our next planning circle meeting. Her son had spent 30 minutes visiting with a neighbor without either of his parents present.  A first in many, many years. A small thing, but not so small either. It speaks to the potential for the world to shift just a bit to make some space for this young man.

I will hold this gem of an idea with me over the next few days of high-order planning and trying to work on a systemic level.  It only matters if we can get the world to move a bit.

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